Friday, 3 January 2014

The Plague of Parkinson's Disease Medications

For over thirty years I have been fighting this fight with all my might. The tiny bastards of varying sizes and shapes that are said to be required five times a day with food to sustain mobility have destroyed my past and have taken away my future.  They have haunted me for more than half my life. They come in disguise of varying names and generics and are supposedly a friend not foe; but little do any of us know including the consultants, doctors, nurses and helplines the pain, damage and destruction they inflict on innocent people. Honestly, the little bastards do not help with mobility....much....but they help with other nasty’s big time; they give licence to a degrading, dishonest and disgusting way of life.

We were never told about them; about how addictive they are, how they destroy families, marriages and relationships; how they change personalities. No one mentioned these tragic dangers. No one asked us any questions either; like were there any predispositions of any kind in the family. If only someone had thought to ask that question or mention the side effects of these tiny insignificant little bastards maybe we would not be where we are today. Maybe we would not have lost everything to the vices of these tiny little non-descript and otherwise irrelevant little pills. No different in size or shape to any other little pill but so much more powerful once digested. Doctors and consultants say they only recently knew of the indescribable side effects but research on the net tells me differently; they have known for a long time that some individuals bear the pain of these medications. It is a human right that patients out there know the truth and it is time we became aware. It is time this revolting secret was made public knowledge so no other family has to suffer at the hands of these revolting little tablets. I believe I am one person who is capable and strong enough to share her story.

These small rotten little pills undoubtedly contributed to the breakdown of my family unit and plenty of others which you may have read about over the years in the national press. After 25 years of marriage, I had no choice but to surrender to a traumatic separation, a divorce laced with years of domestic violence and psychological, emotional and physical damage and despair to me, the wife and carer. I was so depressed I lived in a daily fog and just functioned in order to get through the day. In the end my daughter and I fled in exasperation and were homeless. We lost our family home, income and all our belongings; we fled in what we stood up in. It was the scariest time of my life and I had no idea how I was going to survive let alone recover.

Trauma, eating disorders, depression and anxiety affected my child and she had an estranged relationship with her father for over 10 years while she grieved the death of the man she first knew as her Dad. The only way I can cope with the man I know now, is to convince myself that the man I married has passed away and that this is a different person I deal with now. These small so called insignificant multi coloured little tablets are extremely dangerous drugs that, in some patients, bring about and exacerbate Impulsive and Compulsive Behaviours, some of which are drug and alcohol abuse and cravings, excessive gambling and shopping and hyper-sexuality to name just a few.

My ex-husband participated in two of these unsavoury habits and rendered us bankrupt. In one year he blew £200,000 on drugs, women, hotels and sex aids, not to mention how much he gave to the girls to furnish their lifestyle. He gave away items from our home to pay for his needs. His personality changed completely and he was unrecognisable as the man I married. He can’t plan or manage time and doesn’t know right from wrong and is a compulsive liar. He will disappear for days on end.

This story is extremely personal and hard for me to write but it is important that I share my story to endeavour to ensure to the best of my ability that other families never have to suffer the life we have for three decades at the hands of these disgusting medications.

Consequently, I must highlight several important issues that I feel must become of prime concern to all Parkinson’s consultants and nurses and must become obligatory practice in the diagnosis of all Parkinson’s patients.

1. Patients need to be made aware of the side effects of these nasty drugs at diagnosis
2. Consultants need to ask the question: "are there any obsessive traits in the family  
3. There needs to be more research into better drugs
4. There needs to be more support for the wider family and specifically the carer
5. Children need support
6. Patients suffering these side effects need mental health and a treatment programme

7. There needs to be housing support for families that lose their homes and life savings
8. Family history needs to be taken into consideration

I have asked for help, assistance and support and to be listened to and heard from a huge range of support services; Parkinson's UK, Social Care, Vulnerable Adults, GP, Consultant, Police, Victim Support, and Carers Support. No one knows how to help, our story is so complex. I feel very let down by the system, very alone and very insignificant. There was one Parkinson's Specialist Nurse who best supported us when we had to get my ex-husband off the Parkinson’s drug Cabergoline (which was the main drug that was the main problem) but when we fled and my ex-husband moved areas we could not work with her any longer. I have to say she was an incredible person. In different ways both my daughter and I had breakdowns, therapy and relied on our family to see us through. Some friends turned their backs on us because they didn’t believe that my ex-husband could possibly be behaving as I described, he was "Mr Charming" in public (and still can be) and they remembered him as the eminent upright business man of 30 years previous. This has been added pain but I believe in karma and they will have their day, one day.

My family has been destroyed and my daughter and I have had to build a new life. Thirteen years later we are just about healed but the pain and memories will never go away. The man I married 35 years ago and who is the father of my child, died a long time ago. Accepting the past as a bereavement is the only chance I have of coping with the past, living the present and moving forward to a brighter future. I am a strong woman and a survivor and I will survive.
Please never let this happen to another family that is my one lasting request; please share this post and help me to get the message out there to save families. Share this far and wide.....often.

                                   I will survive, for as long as I know how to love, I know I'll stay alive,
                                    I've got all my life to live, I've got all my love to give and I'll survive,
                                                                                          I will survive
                                                                                                          Gloria Gaynor

Further support
Parkinson's UK 0800 800 0303
Parkinson’s Magazine with article about Impulsive & Compulsive Behaviours February 2014
Parkinson's Specialist Nurses & Care & Share for Carers
Victim Support 0845 30 30 900

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